I am writing because my brother, your friend, your family, Mike Wolfsen, has a once in a lifetime opportunity to receive a brand new cutting edge surgery that can save his vision. He has just qualified to be one of 6 patients to undergo a gene therapy treatment that has proven successful in preventing blindness and restoring some lost vision! In order to receive the treatment, Mike has to fly to the Bascolm Palmer Eye Institute in Miami, Florida in only 3 weeks for surgery. He then has to return every 3 months for 2 to 5 years for follow up appointments. We are reaching out to family and friends to raise funds for the travel costs so that Mike can receive this incredible surgery. Donations of any size at all will go a long way in helping Mike! Please continue reading for the whole story...
As most of you know, my brother Michael was diagnosed at a young age with Choroideremia, a rare inherited disease that causes progressive vision loss, ultimately leading to complete blindness. The nature of this disease is such that one's vision slowly deteriorates over time, decreasing peripheral vision as well as visual acuity until there is nothing left. As a result, everyday events we take for granted are already extremely difficult or impossible for Mike, such as driving, getting around during and after dusk, walking into a dimly lit cafe or restaurant, navigating crowded sidewalks and busy streets, etc...Up until now, there have been no known effective treatments or cure. Despite these challenges Mike is and always has been incredibly brave and optimistic; keeping up to date on all of the latest Choroideremia research and treatments. This is how he would come to have the incredible opportunity to participate in the first gene therapy clinical trial in the US for the treatment of Choroideremia.
Four years ago, we learned of a group of researchers in England conducting gene therapy treatment on a group of Choroideremia patients with the goal of halting the progression of the disease and preventing total blindness. The patients underwent surgery in one eye which was injected with a virus carrying a healthy gene to replace the impaired or mutated gene in their eye. The research had previously never been tried on humans. Mike and all of us in his family waited anxiously and were thrilled when the trials began to show successful results. We all prayed and waited for this cutting edge gene therapy treatment to come to the US. We didn't have to wait long!
Two years ago, Mike and I read of a team of researchers in Miami, Florida who had received funding to conduct this gene therapy treatment in the US. They could accept only 6 volunteers to receive this surgery. Mike and I vigorously wrote to the head of this team to see if Mike could qualify and get into the study. After many months with no word, we were beside ourselves when we finally received an email relaying Mike's acceptance. Mike flew down to Miami two weeks later where he bravely underwent this new experimental surgery in his left eye, not quite knowing what the outcome would be. Mike returned to Bascolm Palmer every few months for the last two years where they have tracked his results. Not only has there been absolutely no further visual deterioration in Mike's treated eye, but his visual acuity has greatly improved as well! Mike's results have exceeded the study's goals. Our whole family shed tears when Mike told us he could see some stars in the sky again at night. We can't even imagine what it must be like for Mike to know that his left eye will most likely never go blind.
Because the results have been this successful, Mike now has an unexpected opportunity to receive the surgery in his right eye as well. We were just notified of this exciting opportunity a few days ago. Not only could this change the course of Mike's life by saving his vision, but he is excited to be a part of the development of an astonishing new gene therapy treatment that has the potential to help people with similar eye diseases. With all of our support, Mike will be receiving treatment for his right eye in just 3 weeks!
Thank you all so very much for reading and for your love and support!
- Lynne Thomas
- marcus denice
- Luke Jacobs
- Joanna Masci
- Kos Kostmayer
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